Overview of the Information Systems Currently Available to Public Health

Researchers

David WalkerNational Immunization Program

dwalker@cdc.gov (404)630-1882

DIMACS Working Group

October 16, 2002

• Availability of data for public health monitoring or research is increasing

• Related data may exist in multiple sources • Design of data source can influence

applicability to specific studies• This presentation will provide:

– Basic description of epidemiological surveillance system issues

– General review of CDC data sources– Example of integrating information sources

Background and Objectives

• Defining “Surveillance” in Epidemiological Terms• Issues in identifying data sources

– Surveillance-specific vs. Administrative data sources – Active vs. Passive Surveillance

• Examples of data sources– “Notifiable” health incident reporting– Spontaneous health incident reporting– Standard health-related surveys– Administrative data systems– Commercial entities

• Integration of Data Sources• Summary

Presentation Overview

“The systematic collection of data pertaining to the occurrence of specific diseases, the analysis and interpretation of these data, and the dissemination of consolidated and processed information to contributors to the program and other interested persons.”

Raska, K. 1966. “National and international surveillance in the control of infectious diseases.” WHO Chronicles. 20:313-321

Epidemiological Surveillance Systems

• Surveillance of specific diseases

• Based on public health monitoring or analysis needs

• Data collected through public health entities

• Detailed definition of data elements, population sampling methods, and survey administration

• Often designed to allow patient follow-up

Traditional Epidemiological Surveillance

Inventory of CDC Surveillance Systems

1. 122 Cities Mortality Reporting System 2. Active Bacterial Core Surveillance 3. Active Surveillance for Cryptosporidium and Cyclospora via FoodNet4. Adult Blood-Lead Epidemiology and Surveillance Program5. Adult Spectrum (HIV) of Disease6. American Red Cross Health Impact Surveillance System for Natural Disasters7. Behavioral Risk Factor Surveillance System8. Blood Donor Study9. CDC Firearm Injury Surveillance Study10.Central Nervous System Injury Surveillance System11.Childhood Blood-Lead Poisoning Surveillance System12.Cholera13.Cholera and Other Vibrio Infections Surveillance System14.Clinic-based Blinded HIV Seroprevalence Study15.Coal Workers' X-Ray Surveillance Program

Inventory of CDC Surveillance Systems

16.Counseling and Testing System17.Creutzfeldt-Jakob Disease Surveillance System18.Diphtheria Antitoxin19.Enterovirus Surveillance System20.Fatality Assessment and Control Evaluation21.Foodborne Diseases Active Surveillance System22.HIV/AIDS Reporting System23.Haemophilus Influenzae Surveillance System24.Hazardous Substances Emergency Events Surveillance25.Hazardous Waste Workers Surveillance Project26.Hearing Conservation and Audiometric Database Analysis System27.Hemophilia Surveillance System28.Imported Dengue29.Jail STD Prevalence Monitoring Project30.Laboratory Surveillance of Cryptosporidium and Malaria via PHLIS

Inventory of CDC Surveillance Systems

31.Longitudinal Follow-up to National Maternal and Infant Health Survey32.Lyme Disease - NETSS33.Medical Examiner/Coroner Information Sharing Program34.Metropolitan Atlanta Congenital Defects Program35.Metropolitan Atlanta Developmental Disabilities Surveillance Program36.Minimal Data Set for Hemophilia37.National Breast/Cervical Cancer Early Detection38.NHANES I Epidemiologic Follow-up Study39.National Ambulatory Medical Care Survey40.National Antimicrobial Surveillance System41.National Bacterial Meningitis Reporting System42.National Botulism Surveillance System43.National Campylobacter Surveillance System44.National Coal Workers' Autopsy Study45.National Congenital Rubella Syndrome Registry

Inventory of CDC Surveillance Systems

46.National Electronic Injury Surveillance System47.National Electronic Telecommunications System for Surveillance48.National Employer Health Insurance Survey49.National Exposure Registry50.National Health and Nutrition Examination Survey51.National Home and Hospice Care Survey52.National Hospital Ambulatory Medical Care Survey53.National Hospital Discharge Survey54.National Immunization Provider Record Check Study55.National Immunization Survey56.National Kawasaki Syndrome Surveillance System57.National Malaria Surveillance System58.National Mortality Follow-back Study59.National Nosocomial Infections Surveillance System60.National Nursing Home Survey

Inventory of CDC Surveillance Systems

61.National Occupational Mortality Surveillance System62.National Polio Surveillance System63.National Reye Syndrome Surveillance System64.National Salmonella Surveillance System65.National Surveillance System for Hospital Health Care Workers66.National Surveillance System for Pneumoconiosis Mortality67.National Surveillance for Domestic Arboviral Encephalitis Cases in Humans68.National Surveillance of Dialysis-Associated Diseases in U.S.69.National Survey of Ambulatory Surgery70.National Survey of Family Growth71.National Traumatic Occupational Fatalities Surveillance System72.National Tuberculosis Surveillance System73.National Vital Statistics System74.National Vital Statistics System - Fetal Death75.National Vital Statistics System - Linked Birth/Infant Death

Inventory of CDC Surveillance Systems

76. National Vital Statistics System - Mortality77. National Vital Statistics System - Natality78. Nonhuman Primate Retrovirus Infections Among Workers79. Parasitic Diseases Drug Service80. Pediatric Nutrition Surveillance System81. Pediatric Spectrum (HIV) of Disease82. Perinatal Hepatitis B Prevention Data Management System83. Pertussis84. Plague85. Pregnancy Nutrition Surveillance System86. Pregnancy Risk Assessment Monitoring System87. Public Health Laboratory Health Information System88. Regional Infertility Prevention Program - Chlamydia89. Second Longitudinal Study on Aging90. Sentinel Counties Study of Viral Hepatitis

Inventory of CDC Surveillance Systems

91.Sentinel Event Notification System for Occupational Risks - Asthma92.Sentinel Event Notification System for Occupational Risks - Pesticides93.Sentinel Event Notification System for Occupational Risks - Silicosis94.Sentinel Site Laboratory-Based Surveillance for Cyclospora95.Sexually Transmitted Disease Surveillance System (Form CDC-73.126)96.Sexually Transmitted Disease Surveillance System (Form CDC-73.60A)97.Sexually Transmitted Disease Surveillance System (Form CDC-73.998)98.Sexually Transmitted Disease Surveillance System (Form CDC-9.2638)99.Sexually Transmitted Disease Surveillance System (Form CDC-9.688)100. Sexually Transmitted Diseases Management Information System101. Shigella102. State-Based Emergency Department Injury Surveillance103. Streptococcus Pneumoniae and Haemophilus Influenzae104. Supplement to HIV/AIDS Surveillance105. Surveillance for Giardia

Inventory of CDC Surveillance Systems

106. Surveillance for Pneumocystis Carinii Pneumonia Treatment Failures107. Surveillance for Trichinosis and Cryptosporidium108. Tetanus109. Tickborne Relapsing Fever and Tularemia110. Tuberculosis Infection in Health Care Workers111. Tuberculosis Information Management System 112. U.S. Influenza Sentinel Physician Surveillance Network113. Unexplained Deaths and Serious Illnesses Surveillance114. Universal Data Collection and Serum Specimen Collection System115. Vaccine Adverse Event Reporting System116. Vaccine Safety Datalink Project117. Viral Hepatitis Surveillance Program118. Waterborne Diseases Outbreak Surveillance System119. Young Men's Survey120. Youth Risk Behavior Surveillance System

• Intent of data collection for purpose other than for epidemiological surveillance

• May cover a broad range of health issues

• May not be patient specific

• Data structure may not conform to public health-related data standards

• May not have population sampling concerns

Administrative Health Data Sources

• Data collected for specific disease or health issue

• Formal sampling protocols employed

• Usually a specific time frame for administering surveys

• Typically conducted by trained public health professionals

Active Surveillance Design

• Health issue may be more broad or general in nature

• Responders may be self-selected, not sampled

• Data collection may be on-going without discrete intervals

• Data may be “self-reported”

Passive Surveillance Design

• State-mandated requirements for disease surveillance

• State and Federal monitoring of potential outbreaks of communicable diseases

• Provides for individual case investigation

• Monitoring of disease spread

Notifiable Disease SurveillanceCharacteristics

Nationally Notifiable Infectious Diseases United States, 2002

• Aids • Anthrax • Botulism • Brucellosis • Chancroid • Chlamydia• Cholera • Coccidioidomycosis • Cryptosporidiosis • Cyclosporiasis • Diphtheria • Ehrlichiosis • Encephalitis

• Enterohemorrhagic Escherichia coli

• Giardiasis • Gonorrhea • Haemophilus influenzae,

invasive disease • Hansen disease (leprosy) • Hantavirus pulmonary

syndrome • Hemolytic uremic

syndrome • Hepatitis • HIV infection • Legionellosis

Nationally Notifiable Infectious Diseases United States, 2002,

Continued• Listeriosis • Lyme disease • Malaria

• Measles• Meningococcal disease

• Mumps

• Pertussis

• Plague

• Poliomyelitis, paralytic

• Psittacosis

• Q fever

• Rabies

• Rocky mountain spotted fever

• Rubella

• Rubella, congenital syndrome

• Salmonellosis

• Shigellosis

• Streptococcal diseases • Syphilis • Tetanus • Toxic-shock syndrome

• Trichinosis • Tuberculosis• Tularemia • Typhoid fever • Varicella (deaths only) • Yellow fever

National Electronic Telecommunication Surveillance System (NETSS)

National Electronic Disease Surveillance System (NEDSS, in development)

HIV/AIDS Reporting System (HARS)

Sexually Transmitted Disease Management Information System (STDMIS)

Tuberculosis Information Management System (TIMS)

Notifiable Disease SurveillanceExamples

• Weekly reporting from States to CDC

• Provides data for Morbidity and Mortality Weekly Report (MMWR)

• Includes patient demographic data (core record)

• Includes disease-specific data (extended record)

• Case investigation allows additional data collection and editing

NETSS Characteristics

• National Vital Statistics System

• Birth and Death certificates filed in states reported to NCHS

• Data standards developed by NCHS, but can vary by state

• NCHS prepares public use data files or reports– Vital and Health Statistics Series– National Death Index

Vital Statistics ReportingCharacteristics

• Basic demographic data on child and parents– Name, Age, Race, Residential information, etc.

• Newborn’s health status– Weight, gestational age, apgar scores, congenital

malformations, birth method, etc.

• Mother’s health status– Pregnancy status, STD test results, chronic or

infectious diseases present, hazardous material exposure, alcohol, tobacco, or drug use during pregnancy, conditions of labor, etc.

Vital StatisticsBirth Certificate Information

• Basic demographic data on decedent– Name, age, race, occupation, etc.

• Place of death– City, county, hospital, etc.

• Cause of Death– Immediate cause, contributing causes, length of

illness, etc.

• Disposition of body– Autopsy performed, cremation, location of burial,

etc.

Vital StatisticsDeath Certificate Information

• On-going or annual surveys• General surveys

– National Health Interview Survey– Complex sampling protocols

• Specific to particular health issue– National Fetal Death Mortality Survey– Follow-up on specific health incidents

• Monitor specific health provider services– U.S. Influenza Sentinel Physician Surveillance

Network

National Health-Related SurveysCharacteristics

• National Health Interview Survey (NHIS)

• National Immunization Survey (NIS)

• National Health and Nutrition Examination Survey (NHANES)

• Behavioral Risk Factor Surveillance System (BRFSS)

National Health-Related SurveysExamples of General Surveys

• National Natality Survey

• National Fetal Mortality Survey

• National Electronic Injury Surveillance System

• Birth Defects Monitoring Program

National Health-Related SurveysExamples of Health Issue-Specific Surveys

• 122 Cities Mortality Reporting System

• National Hospital Discharge Survey

• National Ambulatory Medical Care Survey

• National Nursing Home Survey

National Health-Related SurveysExamples of Health Provider Surveys

• Voluntary reporting

• Different individuals may report same incident– Patient, physician, family member, etc.

• Multiple records for same incident may contain different data

• Subsequent events for the same individual may not be linked

• Rates difficult to calculate due to lack of denominator data

Spontaneous Surveillance SystemsCharacteristics

• Adverse Event Reporting System (AERS)– Reports of suspected adverse events to

pharmaceutical products

• Vaccine Adverse Event Reporting System (VAERS)

Spontaneous Surveillance SystemsExamples

• Health data collected by health service provider– Can be population-specific

• Administrative purposes for data– Enrollment, patient registry, billing, case

management, procedure results

• May link to external data sources• Rarely study-specific data• Subject to anomalies of administrative system

– “Upcoding” diagnoses, inclusion of “rule out” codes, etc.

Administrative Data SystemsCharacteristics

• Medicare and Medicaid Systems

• Veterans Administration data system

• Vaccine Safety DataLink– HMO data for pharmacoepidemiology

Administrative Data SystemsHealth Provider Examples

• Chronic disease registries– Cancer Surveillance, Epidemiology and End Results

(SEER) – National Congenital Rubella Syndrome Registry

• Vaccine registries

Administrative Data SystemsRegistry Examples

• Laboratory reporting systems

• Vaccine Management System (VACMAN)– Vaccines for Children grant ordering system

• Insurance company claims processing

• Industrial employees records– Ford Motor Company– Textile plant vaccination records

Administrative Data SystemsOther Examples

• Data captured by commercial or industrial entities

• May not be patient-specific

• Data may not be complete

• Data quality may be suspect

Other Health Data SourcesCharacteristics

• Over-the-counter drug sales from pharmacy or grocery chains

• Emergency response systems (911 calls)

• Web logs of health-related entities

• Media monitoring services

Other Health-Related Data SourcesExamples

• Provides more thorough information about health events

• Must be planned at an appropriate level for the granularity of the data

• Integration at the patient-specific level– Matching lab reports with notifiable disease reports

• Integration at a more general level– Linking patient residence to Census Block data

• Integration at a summary level– Linking county or state summary

characteristics

Integration of Data Sources

• CDC Information Systems Integration Project– Integrating notifiable disease reporting systems,

laboratory reporting systems, and disease registry systems

• Match Medicaid data with VA Hospital data– Provides more complete source of elderly patient

data

• Link patient data to Census Block data – Provides demographic characteristics missing from

patient data

Integration of Data SourcesExamples

• “Epidemiological Surveillance” has expanded beyond it’s traditional roots

• General characteristics of surveillance data sources– Surveillance can be active or passive – Administrative data sources can provide surveillance data

• Examples of data sources– Notifiable disease reporting– Spontaneous health incident reporting– National health-related surveys– Administrative data systems– Commercial entities

• Integration of Data Sources

Summary

Statement regarding Integration